HIV/AIDS Awareness at Swinburne University
(Prahran Campus)
Hello, my name is Steven, and I have the (Human Immunodeficiency Virus) or HIV, that causes the (Acquired Immune Deficiency Syndrome) or AIDS.
MY MOVE TO BE TESTED
I moved from Sydney in May, 1995, and on the 9 May, at 4:01pm, my life changed for ever – I now knew for certain I had the HIV virus.
Since my previous blood test in December of 1994, I had sero-converted - I was 99.99% sure I had the HIV virus - I only needed a blood test to prove it - I had some kind of sixth sense - I knew I was positive.
In the ten years since then, my life has gone through numerous transformations, and as a result of these; and the people in my life, I am now living with my HIV.
I moved to Melbourne , because I had no support in Sydney , I figured I was not able to go and get a blood test and then go home to mum and dad, and tell them that I was HIV positive.
I had one good friend here in Melbourne, back then, and he, to this day, is one of my dearest friends. My good friend encouraged me to get tested, and supported me through my diagnosis, and continues to be a mentor to me, with his ‘pearls' of wisdom, to this day.
IGNORANCE & HOW IT AFFECTED MY LIFE
They say ignorance is BLISS, and to this day, I have only really had problems with two people in my life, regarding my HIV status, my brother, 12 years younger than me, and my father, a wonderful man, who grew up in Belfast and was educated in the ‘old' school, while my equally wonderful mother supported me, acceptance was very thin, this however changed recently at my sister's wedding, in 2004. I now feel I am clos er to my family than I have ever been.
While I never expected my family, or indeed anyone else, for that matter, to understand my life, acceptance was very important to me. I used to think, and I will admit, it bothered me, a lot, that I would never get this acceptance, from my family, before it was to late – my parents are not getting any younger, and one day they wouldn't be here, and that I would never be accepted, not because I was gay, but because of my HIV - the way I looked at, the gay thing was now not really an issue, my HIV status was.
I said to my mother once, that while I don't believe my grandfather, a wonderful man, would have understood any more than she did, about my life, but he would be proud of the humanitarian work I am doing, to help prevent others from contracting the HIV virus, my humanitarian nature I believe, I inherited from my mother's father, who was my best friend, a caring a gentle man, as was her grandfather, my great grandfather.
DISCLOSURE OF MY HIV TO OTHERS
The disclosure of my HIV status to me is a foregone conclusion, don't get me wrong, I don't have ‘I am HIV positive tattooed on my forehead', but in ANY situation where sex is involved, I feel I must disclose my status to sex partners.
There is still a stigma attached to the virus, even in the 21 st Century. I was asked once, by my boss, while I worked at a Night Club here in Melbourne, ‘Why was I so up front about my HIV Status?' and I told him, ‘What did I have to fear, if someone has issues with my HIV status, then that is their problem, not mine.'
The way I look at it, talking about my HIV status helps to educate others and also helped me to accept my own diagnosis.
Disclosing my HIV status to others, other than to sex partners, was a daunting thing, and can be for many people - I had to decide who to tell and why. Disclosing my status to family was, to me, a necessary evil, for want of another word - I didn't want my family to find out by accident, i.e. in the event I got sick or ended up in hospital for some other reason.
In disclosing my status, to my family, I lost access to my niece, and there was really nothing I could do about it, except try to educated my family. The HIV virus is a non-communicable disease, but owning to the stigma associated with HIV, convincing people of this can be difficult.
Disclosure to my employer was not so much of a problem, as I work in a Club which was gay owned and operated, but still there have been cases where HIV positive people have been dismissed by their employer, and some members of the gay community who are not accepting of PLWHA's (People Living with HIV/AIDS)
DENIAL OF MY HIV STATUS & DEPRESSION
The dark days of the denial of my HIV status came to a shattering ended on 8 December 1998, when I attempted suicide. Why I hear you ask? Because I was in denial and I simply could not cope with my life. My own day of reckoning came after three years of denial and drug abuse, smoking enormous amounts of cannabis and living on 30 milligrams of valium a day, just to cope – I never turned to hard narcotics or alcohol, thank God. It was only after I had to tried to take my own life, I came to realise, I so much to LIVE for.
My depression left me feeling both alone and isolated. I recall, prior to my suicide attempt, spending days, as many as a weeks at a time, just lying on the the lounge, in what some might call a ‘trance', totally disinterested in anything. I never spoke to anyone, went out or even ate, very much - depression, if le ft untreated, can be very destructive.
I was told by someone once, that he had never experience depression, I asked him, ‘how did he know he hadn't ever suffered from depression', as I was in denial of my depression for years, and now believe I suffered u ndiagnosed adolescent depression, which was compounded by my HIV diagnoses.
Recently - in March 2005 - I was discussing something with a friend I have known for a while now, about issues that came up from an HIV medicine course I had recently done. During the discussion we touched on suicide rates among HIV positive gay men, and my friend related his own experience to me, which was hauntingly familiar – he related it to being in a ‘dark room' or ‘black box', and not being able to find his way out - while I sat there listening to him, it all made sense to me – it was like looking at my own ‘dark period' through a pin hole – I had never related the dark days in my life, leading up to my suicide attempt, as being trapped in a ‘dark room' or a ‘black box'.
As my friend put it, everything closed in, and got darker and darker, until, in both our cases, something snapped, and we both take significant overdoses of a drug cocktail, that could have killed us, in my case it was 40 valium, in my friends, it was much more than this.
The one thing that was so inextricably obvious to both of us, is that once we found the ‘way' home – i.e. OUT of the ‘dark room', we knew how never to return to it, EVER – in both cases, our suicide attempts we extreme cries for help, and I b elieve, that if I personally, had never got the help I so desperately needed, I would not be here standing in front of you here today.
We both agreed, my friend and I, that everyone needs to go through ‘dark room' or the ‘black box' as a learning experien ce, but by the same token, if there are people who never go there, they are the LUCKY ones, trust me.
I apologise if hearing this has upsets anyone, but it is apart of how I have survived and how I, and others who LIVE with this virus, are continuing to SURVIVE.
COMBINATION THERAPY – HIV TREATMEN T
I was on medication, combination therapy, from 1996 until October 2002, I gave up my original drug regime, by accident, literally – I went on a binge of other drugs – I literally forgot to take them for two week s, the biggest shock was more that I was still alive – rather than that I had forgotten to take them, so I stopped taking them altogether, and my doctor had NO say in it.
Combination therapy is using a combination of ‘traditional' medication, which attack s the HIV virus at different levels. There are a lot of publications available that explain how this works.
During the time I was on treatment, I had what I now know to be side effects of the medication, horrific mood swings and clinical depression – I was clinically diagnosed with depression after having an emotional meltdown in 1999 – I was convinced I was loosing my mind.
I only became aware the mood swings were side effects after I stopped taking the medication – I just assumed the mood swings were part of my personality – the man I am today, is a very different man from the one that I was before October 2002, it was a tur ning point in my life.
The depression, I believe, is HIV associated and comes ‘hand in hand' with living with a life threatening illness, that can literally change, almost, overnight. After two years off medication - I went back or Anti-Retroviral Therapy (ART) in October 2004, exactly two years after I stopped – I had to go back on combination therapy, a different drug combination, from what I was on, and the prognosis is encouraging, my T-Cells are up slightly from 81/ml of blood to 94/ml of blood, still the lowest ever in 9 years, and my viral load is again UNDETECTABLE.
My depression is being treated with anti-depressants, something I will probably be on for the rest of my life. The HIV/AIDS virus is NO LONGER at death sentence - I am living proof of that.
In March 2005, my T-Cells dropped again, for no apparent reason, to 71/ml of blood, this was now the lowest they had ever dropped to, in 10 years, and now I was challenged with finding out why they were so low, my doctor admitted to me, he was at a loss, so I went of the Alfred Hospital in Melbourne, for more blood tests.
About a week later, I was phoned by the doctor I had seen, and told I did indeed have Golden staph – Staphylococcal infection – a Bacteria of the genus Staphylococcus – I had act ually suggested this might be the case, while I was at the Alfred. It was the Golden staph infection in my right leg that knocked my T-Cells, this was fixed with aggressive anti-biotics.
Complementary medicine is used together with conventional medicine. An example of a complementary therapy is using aromatherapy to help lessen a patient's discomfort following surgery. While I have not personally used Complementary Therapy, I have friends who have, and the do seem to have made a difference to their status … ..it has been argued over the past 10 years or so, that Cannabis is beneficial to people with HIV/AIDS, and yes I do have to occasion smoke, and I believe it does help me relax, and definitely helps me sleep better, but I am no longer smoking it to bury the truth, getting totally smashed for no real reason.
NOTE: At the time the original story was written, I was not using Complimentary Medicine, I am now, and have been since October 2004, and they have made an enormous difference - they have given me back my life.
HIV MEDICINE
As I mentioned early, I attended a Short Course in HIV Medicine for Community Workers in March of 2005, and after the most amazing two day short course, I came away with a far greater understanding of how the HIV virus has invaded my body, why and how my original meds regiment failed and why my current regiment works and is continuing to work.
During the short course, I learnt about the blood brain barrier, a super fine membrane that actually prevents the HIV virus from invading the brain. I wondered how it was not able to cross over, and it was related to me as like trying to push a pea through fly wire screen mesh. The interesting thing is I am actually taking HIV medication that does cross the blood brain barrier, and I was not even aware of this.
If the virus was to get a hold of the brain, it can lead to cognitive disorders and HIV associated dementia, the same blood barrier also protects the spinal column, and prevents the virus entering the central nervous system.
As a result of what I now know, I have learnt more about the condition, that I suspected a dear friend had leading up to his death in October 2003.
BEING ACCEPTED
I mentioned before, having a reason to LIVE, after attempting suicide. I have recently traveled to the USA and Europe in 2003, and I become reacquainted with my family, including my 12 years old niece, and I will become and uncle again in 2005, twice, both my sister's are having families – family is a good reason to LIVE, as are those people in my life I class as GOOD friends. I believe one journey ended and a new journey started with this new found acceptance.
SURVING TO LIVE FOR MY FUTURE
I am a person living with the HIV/AIDS virus, and I believe, I will never die of AIDS related problems, I will probably die and old man, in my own bed of OLD age, and the people in my life I call friends have helped me achieve the life I have now, and most important of all, are the friends I have made at the Positive Living Centre here in Melbourne. I have met a lot of amazing people in the past 10 years, and a lot of them I class as friends and are here at the PLC.
Back in the early days of my diagnosis, a person said to me, ‘it doesn't matter how I was infected, what matters is that we – PLC staff and volunte ers – are here to support you (me). That person was the manager of PLC, when we were in St. Kilda.
I am planning to at Swinburne University in 2005 to get my Diploma of Community Development, something I would never have even contemplated 2 years ago, and then to return to work again, to work in HIV Services, developing programs, to hopefully make a difference for all PLWHA's, and to prevent others getting infected with the HIV virus. I gave up work in March 1998, after I was retrenched, and my depression prevented me from working. I have started at Swinburne University in February 2005, to get my Diploma in Community Development, and to date, I, love every minute of it, this could be one of the best thing I have ever done.
As you have no doubt noticed through out my talk, I have been helped by a lot of truly remarkable people from within the HIV, in both the gay and the broader Community, and from my own family, it is now time for me to give something back to a generous community, to which I believe I owe so much, my LIFE.
When I complete my Diploma I am will come back to the HIV Community, and hopefully be able to make a difference to the lives of others living with HIV/AIDS, as we move in the 3rd decade of living with this disease.
I have come to adopt one philosophy through all this; ‘when it comes to HIV/AIDS, knowledge is the best prevention', and by empowering people in HIV/AIDS Awareness, the next generation stands a better chance of beating it.
A POSITIVE ATTITUDE TO LIVING WITH HIV
I am a volunteer at the Positive Living Centre (PLC), as a Peer Support Facilitator and I was also the cook, at the breakfasts the PLC does on Saturday mornings, I am now giving back to the community that has supported me in learning to live with this disease, and it is one of most rewarding things I ever done. I feel a real sense of worth in do the volunteering I do, trying to make the Centre a better place for the HIV/AIDS Community. The Positive Living Centre, is a place that PLWHA's can go to and be in a safe environment, with the support of people who really care, when we need it.
I also participate in on going programs at the Centre, art class and have participated in several day trips, such has the trip Philip Island for the Moto GP, The International Flower & Garden Show and to Melbourne Zoo in 2004. The person that I am today comes from, in a lot of ways, my involvement with the Positive Living Centre and the volunteers that have given up there time to work here.
DISCRIMINATION & PREJUDGEMENT
In closing, I'd like to share an amazing story from my trip overseas, when I visited North Carolina . I met a wonderful lady, who imparted a story to me of discrimination, regarding race, and I told her how some of us with HIV/AIDS had experienced similar – this woman embraced me, out of the blue, and told me I had a GREAT attitude towards life – this lady is an American Negress, and a true humanitarian.
I must admit I prejudged people I have never met and I am constantly amazed to find advisories in the most unlikely places. I have found that some people, me included, have prejudged how people will react to my/their HIV positive status, prejudging, is as bad as ignorance, I believe.
While I don't believe I have ever been discriminated against personally, I have friends who have been, please remember, HIV/AIDS does NOT discriminate – PEOPLE DO .
My name is Steven, I am, positive and PROUD, and Living with My HIV, I thank you for reading to my story.
THE END
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